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The Martin Luther King for the disabled

Among civil rights movements that of the disabled has been slow to gain momentum and public profile. But its accumulated deeds are great, even if its pioneers are almost unknown. One of them was Ed Roberts

Ed Roberts in 1979 at the California State Capitol, where Gov. Edmund G. Brown, to his right, is signing a bill to assist the disabled to live independently. (Bill Edmundson / Associated Press)

By Kathleen KennaSpecial to the Star

Fri., July 16, 2010

BERKELEY, CALIF.—A man in an iron lung, who fought to be educated and live independently here, was one of the early activists for disability rights.

This month, the late Ed Roberts is being honoured for work that helped lead to the Americans With Disabilities Act, one U.S. law which has helped change the world for the better.

Against much Republican opposition, the Americans with Disabilities Act was signed into law July 26, 1990, by a Republican President, George H.W. Bush.

The landmark law bans discrimination against people with disabilities, including in employment, and requires employers make “reasonable accommodations” for disabled workers. It effectively ended America’s de-facto segregation of people with disabilities, and prompted similar laws in 52 countries, including Canada, as well as the U.N. Convention on the Rights of Persons With Disability.

“It’s the gold standard for disability rights,” says Andy Imparato, president and CEO of the American Association of People With Disabilities, largest organization of its kind in the U.S.

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In Canada, the Americans With Disabilities Act helped spark the Accessibility for Ontarians With Disabilities Act —this is still the only province with specific legislation — and continues to be “a model for many other countries,” says Penny Hartin, CEO of the World Blind Union. The union, whose headquarters are in Toronto, has members in 190 countries.

As they lobby for improved Canadian legislation, Accessibility for Ontarians With Disabilities Act architects are still emboldened by the work of U.S. pioneers, Hartin says.

Zona Roberts, 90-year-old mother of pioneering Ed, laughs when she recalls a local newspaper headline after her son became the first to win the right to attend the University of California at Berkeley in his wheelchair.

“It said, ‘Helpless cripple goes to college,’ ” she recalls. “We were tickled by that. He started the whole program.” That was in 1962.

Roberts, paralyzed below the neck from polio at age 14 in 1953, was required to take physical education and driver’s education classes to graduate high school, but had only slight movement in one finger. The school board ignored his good marks and still insisted he couldn’t graduate without these mandatory classes.

Zona used her clout as PTA president to browbeat education officials into granting Roberts’s hard-earned diploma.

“They told Ed, ‘You don’t want to cheapen your diploma, do you?’ ” she says. “That was one of the pivotal, I-can’t-believe-it moments. I wasn’t going to take that. It was easy (to fight) after that.”

Roberts finished high school by going to classes one day a week in a non-motorized wheelchair, and taking courses at home, by telephone and speakers set up at school.

His lungs were so weakened by polio that he lived part of the day in the family’s dining room in an iron lung, an enormous contraption designed to “breathe” for him.

Later, Roberts attended classes at Berkeley with aides pushing his chair over the hilly campus, and slept in an iron lung every night at the university’s medical centre.

Roberts’s campaign to live independently, with paid attendants, began California’s groundbreaking policy of supportive services for people with disabilities.

He turned Berkeley’s medical centre, for awhile, into a mini-dorm for students with significant disabilities. They became disability rights activists known as “The Rolling Quads.”

Today, the campus and city are recognized as world leaders in improving accessibility, inclusion, and equality for people with disabilities.

Berkeley was the first city in the U.S. to create curb cuts for wheelchairs—a design change so historic that the Smithsonian in Washington, D.C. has a hunk of curb broken by activists protesting public space designed only for the able-bodied.

Roberts founded the world’s first Center for Independent Living in Berkeley in 1972, spawning hundreds of such centers in the U.S. and worldwide.

Once told by a state Department of Rehabilitation counselor that he couldn’t be trained for anything because he needed a respirator and wheelchair, Roberts got a Master’s degree at Berkeley, and was later appointed by then-California Governor Jerry Brown to run the state’s Department of Rehabilitation.

Zona became a Center for Independent Living counselor, then director of Berkeley’s disabled students program. Roberts died from a stroke, aged 56, in 1995.

The Ed Roberts Campus under construction here will be an independent living centre, owned and operated by people with disabilities, equipped with the most advanced technologies to assist its users.

In the 1960s and ‘70s, political muscle meant protests.

People in wheelchairs padlocked themselves together, and took over streets and government buildings across the U.S., agitating for their rights.

That included a “creep-in” when disabled youth crawled up the steps of Congress, disturbing then-Republican Senator Bob Dole, who said such stunts did little to help advance the cause.

(Dole is partly paralyzed from World War II injuries. He co-sponsored the Americans with Disabilities Act in the Senate, along with the late Ted Kennedy, and current Republican Senator Orrin Hatch.)

One of the most famous protests was in San Francisco in 1977, where people ranging from the Black Panthers to severely disabled activists held a 25-day “sit-in” at a federal building, urging Washington to end discrimination against people with disabilities.

“It was a revolution,” says California state assembly member Tom Ammiano, a long-time civil rights leader. “The United States was backward on any kind of accessibility issues, on equal access . . . (protests) started to change the way people with disabilities were treated, as second-class citizens, and seen, instead, as productive contributors.”

Ammiano, who marched in San Francisco as a special education teacher, took along his students, so the newest generation could fight for their rights too.

“We were not hiding people any more. Their anger was totally justified.”

The return of wounded Vietnam War veterans made the public more aware of disability rights, Ammiano recalls.

“It was a sweet irony” that an unpopular war helped bring together Republicans and Democrats over the civil rights of people with disabilities, he says.

“It made some people uncomfortable,” Ammiano recalls, noting that then-San Francisco Mayor Dianne Feinstein, now senior Democrat senator for California, initially resisted building ramps and other improvements that would change the historic city hall.

Yet the Americans with Disabilities Act required such structural modifications, along with changes to public education, transit and communications, to boost access for people with disabilities.

Today, Act-inspired design such as talking computers have helped improve accessibility for everyone from toddlers to elders.

“Legislative changes had a big impact in leveling the playing field,” says Carol Glazer, president of the National Organization for People With Disabilities, headquartered in Washington.

After following other civil rights movements for gender, ethnic and racial minorities, the disability rights movement “could still be 20 to 25 years behind” the progress of others, she adds.

“The legislative victory was very significant, but as with any legislative victory, it takes time for society to change its practices, expectations and assumptions,” Glazer says.

Public attitudes about disabilities have changed, but discrimination persists, says Hortin, who still encounters prejudice and ignorance while traveling the world with her guide dog.

But as Baby Boomers age, understanding of disability is increasing, and myths and fears about people with disabilities dissolving.

“We estimate there are 54 million Americans with disabilities, or one in five, and that number is growing with the Baby Boomers, who are living longer through advances in medical technology,” Glazer says.

But, “We want to see advances all across the board. We’re impatient.”

Kathleen Kenna, the Star’s former Washington correspondent, is a rehabilitation counselor and writer living in Nevada.

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